A bunch of random thoughts about what happened today with my CAR-T infusion.
As part of the “Confusion Assessment” you are asked to pick a sentence to write using cursive script, something I rarely do thanks to a life long habit of printing due to writing code in the old days. They said to choose a short sentence because you will be writing it a lot over the next couple of weeks. I chose:
𝐼 𝓁𝑜𝓋𝑒 𝓂𝓎 𝓌𝒾𝒻𝑒.
I may have mentioned that the UHN has a thing called the myUHN , an online patient portal where you can see all your appointments and test results. Between yesterday’s body swabs, and today’ blood work I had 60 new test results!
Just prior to the infusion the nurse is setting up the IV with some saline and then some Benadryl and getting me hooked up prior to the infusion. In a very casual and nonchalant way, without a word, she puts this bag on the IV pole.
This is what it’s all about, the contents of this little bag. “CAR-T cells in approximately 68ml suspension containing 5% DMSO” or up to 200M CAR-T cells.
Shirley asked about the cost to process the cells and it turns out to be $375,000 USD per treatment. That works out to be $5,514.70 USD/ml
Two people, a man and a women, bring the above bag in its frozen state to my room at 3:30pm. It’s in some special container immersed in liquid nitrogen, very cold.
They warm it up and check several times that it’s my CAR-T cells and that I’m the intended recipient. After that the nurse hangs the bag and the infusion is under way. In under 30 minutes it’s all done.
Everyone is very positive and affirming about me and the probability of the success of the treatment.
The gentleman on the way out stops to talk to us and says he was very “emotional” about our story and journey and stated that he was honoured to be a part of this special moment. It was very touching.
Garry is allowing me to add a few thoughts today rather than just editing for spelling, punctuation, and grammar.
So here goes!
The team that is caring for us asks a bit about us and of course I share how we met and are childhood sweethearts. That we have an amazing family and group of friends supporting and encouraging us and of course many other details. Garry has asked me to be brief so I won’t go into all the details but suffice it to say I felt we heart connected with them.
We shared the previous treatments and expressed our gratitude at having this CAR-T treatment, a wonder of modern medicine, being an option for us and that God would add His supernatural Healing power to the treatment to complete the process.
As the cells began to flow into Garry’s arm I was overcome with such a powerful emotion of thankfulness as I could feel the healing power flow into his body. It felt like I was standing on holy ground. I could sense the loving, powerful , mighty presence of God fill the room.
At that point everyone was quite emotional and of course I was crying, but they were tears of joy and thankfulness.
As Garry mentioned the young man came back in the room after completing all the paperwork and thanked us for sharing our story, that it had been a very emotional and special time for him and that he was honoured to have been part of our journey. That he would remember us and that this was not at all typical.
I also had an opportunity to talk with the woman who appeared to be in charge of the cells and she told me the process went extremely well and she was confident that Garry would respond well to the treatment. She said that our faith was an important part of our journey and that she was praying for Garry as well. We shared much more than that and when I told her that Garry had a blog she asked for the link so she could see a patient’s perspective on going through cancer treatment. She was very encouraging and I felt like I had made a new friend.
Our journey has been long and hard, but through it all we have experienced such incredible love and support from so many of you. And we have also grown in our faith and have seen the goodness and faithfulness of God in so many ways.
I will stop for now as I’m pretty sure Garry will say you need to start your own blog.
Just know, my heart is full to overflow for so many things and we love and appreciate all of you for being there for us.